Why researchers need to communicate the story behind the science

A post yesterday on Observations reinforces the importance of researchers pairing patient stories, testimonials and narratives about the scientific process with statistical data to foster public trust and bolster the case for evidence-based medicine.

The entry focuses on a recent essay (subscription required) published in the Journal of the American Medical Association outlining how physicians and scientists might incorporate narratives into the promotion of evidence-based health care information. Katherine Harmon writes:

“Each time, those who espouse only evidence–without narratives about real people – struggle to control the debate. Typically, they lose,” [the authors of the JAMA essay] observed. In the wake of recommendations for reduced breast and prostate cancer screenings from the U.S. Preventive Services Task Force, many cancer survivors and cancer advocacy groups jumped in to tell the stories of how early screening had saved lives.

Many scientists point out that these stories and stats can be misleading because overall survival also increases when more non-life-threatening cancers are detected–and misses the many potential downsides to untargeted screening. That’s where scientists can step up with stories of their own, such as that of the young woman who underwent a series of invasive and stressful biopsies only to reveal that a mass in her breast was not malignant–or the example of the middle aged man who was rendered incontinent after surgery to remove a prostate growth that was not likely to have killed him. Compelling stories could also help counter unwarranted fears about childhood vaccines, by telling the tale of one of the many unvaccinated children who got measles because parents were worried about the purported link to autism.